VENT!---Thinking before speaking...

I love Mantra's response and I thank you for writing this, Joy. It's my daughter, not myself, that is suffeirng from bc, and she had her second chemo treatment today. I have to admit I have wondered myself how to ask her how she is doing, and how to convey to others how she's managing (I have about 30 people on my round-robin email list I try to keep informed) when I know damn well it's not a walk in the park.

 I called her tonight and she sounds woozy and tired. I feel so bad for her. :-(( The things I want to say--you'll feel better in a couple of days, you'll be able to ride your horse by Sunday--seem so hollow and even inappropriate. What I really want to do is just give her a hug and take away the pain and misery, but she is 300 miles away, and even if I were there I would be as helpless as I am now. So I just told her I hoped she would be able to sleep well, that I loved her and would call her again in a day or two.

 We are all in such foregin territory with this. So often there are really no words that express the things we want to say--about our fear, our anger, our desperate wish to make things different, our awful sense of impotence. I so deeply appreicate any advice from those on the front lines, battling this horrible disease, to those of us who only stand on the near perimeter, wanting somehow to share the burden and take away some of the pain, but not knowing the best way to do it. And truly afraid that our efforts might just make things worse.

Sometimes I said "It's rough but I am trying to be brave." I felt like that conveyed that things might not be what they seem (i.e. that just because I'm in public, I'm doing fine). But to be fair, I have to say this - until you go through this stuff, you just have NO IDEA what is involved and what it is like.  Many years ago, I had an across the street neighbor who was going through bc.  I remember when she had a recurrance, she was going to get a BLM and the surgery where they take the fat from your abdomen and reconstruct from it. (Sorry don't know the technical term.) I remember saying something about her 'free tummy tuck', which I have read on this board since is the WORST thing to say. I feel TERRIBLE about it, but at the time I had no idea.  So I think that people do their best but are just lucky enough to be clueless - just like I used to be!

Kirismum - one thing I think you could do is just be honest "I love you so much and am afraid of saying the wrong thing. Do you want to talk about this, talk about something else, or not talk at all? Any of those is fine, I just want to support you the best I can."  I can't imagine anyone being put off by that approach.  Please keep us posted on Kiri's progress. She has collected quite a few cheerleaders among our group, I think (and of course we are cheering for you, too, as you support her).

I understand your frustration but it would be worse if they didn't ask at all or said you looked like shit. They do have the best intentions and everyone takes to these questions and statements differently.

My onc told me Tuesday just before tx2 I look great. And you know what… she's right. I look fantastic except for the hair loss. The steroids fill my face out nicely. ;-) I don't look sick.

People don't know what this is all about. Chemo used to be much worse years ago. That's why people are expecting you to look like crap. 

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How are you doing?
Just say fine. They are really just asking because they care. Granted I do give some of my friends the details when the ask but they are close friends. Try not to go into too much detail with certain things other than saying "metamucil is my new best friend" ;-)

This is an issue all of us have faced during chemo. I usually said, "I'm doing the best I can." The details would have gross them out.

You will be called "brave" and you will be called "strong." Someone on this Board has translated what that really means: "Your life sucks and I'm glad I'm not you." This is hilarious!

The first time someone says to you, "You're SO strong!" remember what it really means and try not to laugh in their face!

Good luck with the rest of your chemo.

*Edited to insert word

Joy-belle, you probably look a lot better than you feel, which is why people say you look good. They mostly care. There are incredibly helpful types, and then just the opposite. Move on and away the hurtful, to protect yourself. Those people don't get it, and perhaps never will. The answer people want to hear is 'fine". Going into medical detail causes eyes to glaze over. Doesn't mean we have to be dishonest, but if we can, let's turn it into a 'teachable' , moment for the insensitive. humur

My new solutions - ignore the content of the question while registering that an attempt has been made, and make a counter-conversation-starter myself. eg. Oh Hallo Joyce, Lovely to see you, how is your son's basketball team doing? Or if they insist on questions about my health, stunned silence, uh, Can i have an easier question please? or, I'll pass on that one for now, so who made these delicious brownies? I had to go this route of proactive deflection because the current situation is hopefully ok regards BC but very much not ok in other important areas and that's not something I want to discuss on every street corner. They mean well most of them, so I hold to that and try and find a practical outlet for the care. Yeah hi Joyce, Great to see you again, do you know anyone in Reykjavik my DD and her bf could go stay with for three weeks? I don't think I will lose too many real friends this way, but will probably shed a few rubberneckers!

I think people expect a lot worse than what turns out to be the reality.  I did not tell many people about my diagnsis for this very reason . . . I did not want to be bothered with this sort of thing, no matter how well-intended the inquiries are.